Monday, April 25, 2011

Comments on the blog...

Hi there-

I wanted to point out a comment from an adult with primary CMS that was received on the blog earlier...I was glad to read it and know many of you will be too.

Anonymous said...
I am a perfectly healthy intlligent university student. I have always hand flapped when excited or imagining things, especially as a kid but even now in private as an adult. My parents and siblings never really drew much attention to it...basically accepted it an a unique thing that made me "me". Because of that, I never looked up what might be causing it until today. Primary complex motor stereotypy is definitely what I have. To any parents out there, if your kid is normal in all other ways don't make a big deal out of it. Kids will realize not to do it in public at some point and automatically regulate it to a private activity. If I had been made to feel "different", I probably would have acted "different". Instead, I have plenty of friends, am doing super well in school and now people just see me as an excitable person. Also, hand flapping is a very enjoyable thing. Why make children feel guilty for engaging in it?



  1. Makes me feel a MILLION times better about my 11 month old son!

  2. Thank you so much for your perspective as a "hand flapper". Your descriptions sounds exactly like My 3 1/2 year old grandson who has been doing it since infancy. He is perfectly normal, extremely smart, social and pretty "cool". We distract him to do other movements sometimes when we're in public if we find people are watching him but he doesn't seem to mind and will clap his hands instead. We've been concerned about teasing when he finally goes to preschool but you put me at ease when you said he will realize not to do it in public. He already is smart enough to catch on to that sometimes. We love his excitement and think he's the cutest, happiest kid we know. Although we have to duck out of the way when he's watching a movie he likes, we let him be himself. Thank you again for sharing and I applaud your family for letting you be "you".

  3. Thank you so much for sharing your story, My granddaughter has been flapping since she was at least 1 1/2 years. She is now 4 and it is a little bit less, but still flapping when she is delighted or really interested in something. It is accompanied by opening her mouth very widely. Sometimes she walks in a circle along with it. She is way above average in intelligence and her communicative skills are excelled. The flapping, mouth opening is exactly as described but it is so good and reassuring to hear of your own personal story. We do not make any deal over it and she easily stops when redirected. Yes she does get stares in public at times, we just let it go, she is too young to notice as yet. She calls it her "happy ducky dance". My nephew is 23 and did it at her age and still has a little hand twitching at times but that is it. I can't imagine medicating her. I will share you story with my daughter, thank you!

  4. Thank you. This is the same approach that we are taking as well with our 4 year old son. I am not making it an "issue" at this point because he is such a happy, smart and beautiful little boy. If people stare, I just ignore them because I am happy with my son just as he is. If it becomes more of an "issue" when he is older and more aware of 'social norms' then we can cross that bridge at that time. Right now his 4 year old peers are not aware of this difference, So I am not drawing his attention to it. As he gets older, hopefully he will continue to feel how amazing he is...hand flapping and all!

  5. Thank you for your website. My daughter is 5 now and I have noticed the complex movements in her since she was around 6 months old. This website and other internet info. helped me realize what she was doing. She is healthy, bright, and well-adjusted in nursery school. I have never brought the issue to the attention of her pediatrician for fear of her being labelled or any attempts to "treat" this. Do you know what the goal is for the Johns Hopkins research? I don't perceive of a great need to find a way to eliminate this behavior when the children are healthy and happy.

  6. I am very happy to have found this blog and your videos. My daughter is currently 7 months old but I have been noticing concerning behaviors/movements since 4 months old. She would stiffen and shake her arms and legs. She now does it mostly when sitting up ( a lot in her high chair when about to be fed) She gets her ankles twirling, arms tensed out, wrists and fingers shaking/moving, mouth open. When i brought this up to her pediatrician I didn't have an adequate video and just my verbal description (and of course she didn't do her excited movements in the office) so she didn't seem concerned and said to just keep an eye on her. Well I now have a good video to show her and after finding all this information i have no doubt this is what it is. She is developing normally in all other areas (other than being a little weary of strangers and startles easily) and just does what we call a "freak out" when excited. When she sees something she likes or wants she starts going and will stop when she focuses enough to actually grab the object or we remove the stimulus. I knew basically right away that is wasn't exactly typical behavior, but she's not in pain, developing normally so I didn't have that sense of urgency. It is a relief to find some explanation and information!

  7. I want to thank the Anonymous commenter who describes himself/herself as "a perfectly intelligent college student" who has always arm flapped. My son is now seven and has been flapping since he was six months old, and jumping since he could walk. We've always accepted it, and only had him evaluated in Kindergarten just to be "on the safe side."

    The doctor at Stanford told us that in 30 years of practice, she had seen only one other child, besides our son, who exhibited the kind of arm-flapping and jumping he did but showed absolutely no signs of being anywhere on the autism spectrum. She didn't even mention motor stereotypy, which tells me that this is a diagnosis that doctors need to be more aware of.

    At any rate, we've always been very accepting of the behavior, because our son has told us that flapping helps him think. He is very specific about the kind of thinking he does while flapping--it involves seeing objects very specially and using those objects to build things in his mind--and so we see it almost as a gift of focus, perhaps a prelude to a career in engineering or some related filed. I should mention that I make my living as a novelist, and my whole life I have "zoned out" while thinking; I don't flap, but my husband pointed out that when he met me in my early twenties in graduate school, I rocked in my seat. I also remember rocking and swaying as a child. I have always been a pretty happy person, and while I no longer rock or sway in public, I do it sometimes at home when I'm thinking through a scene in a novel I am writing. For me, as for my son, there is a very strong connection between repetitive movement and periods of intense, creative thoughtfulness. The doctor conducting the Johns Hopkins study on motor stereotypy has indicated that there may be a genetic link; I will be very interested to see where this research takes him.

    "Hand flapping is a very enjoyable thing," Anonymous says. My son tells me this all the time. He knows to flap down by his sides when he's at school so as not to distract other children, but when he's at home we let him do it as much as he wants. I'm not saying I've not spent time worrying about the flapping, but I have accepted that it is part of his personality, and I have always felt very strongly that I do not want to make our son feel bad about something that just comes very naturally to him, hurts no one, and gives him comfort. I believe that there is too little time these days for thinking, with endless structured activities. When children want to think, they should be allowed to do so. If flapping helps, as long as they are not being ostracized for their behavior, I see no need to stop them. Children don't all need to fit the same mold.

    For parents of very young children who are wondering when the flapping will stop, I can say I used to wonder the same thing myself. It hasn't stopped, but it hasn't hurt my son. He has many friends and is well-liked by his peers and teachers, is good at sports, and is a well-rounded, coordinated kid. Stressing too much about it probably won't help your child. Enjoy your child's unique energy and creativeness.

    It's so good to hear from a well-adjusted adult who is an example of how one can live well and happily with motor stereotypy. Thank you for publishing Anonymous's comment, and thank you so much for this wonderful, informative website!

  8. My 7 1/2 yr old daughter is a hand flapper and has been since a very young age. My question to Amanda (and anyone else who has input) is a child, if you could have went through behavior therapy to learn to control it, would you have wanted to do it? Also, did other children in grade school make fun of you for it? My daughter has very thin skin and I worry so much about the other kids. They already ask "why do you do that" and she is only in second grade. Any comments, thoughts and suggestions would be appreciated. Thank you

  9. I'm a 45 year old male who, since childhood, exhibited signs of complex primary motor stereotypy. To any parents out there with children who have been diagnosed with primary motor stereotypy, I'm here to tell you to feel rest-assured that your child will grow up to be 'normal,' and might even possess gifts that most 'normal' people do not.

    As a child, I always had a vivid imagination. My imagination would often run away with me. During these episodes of intense imagination, I'd twirl my fingers before my face, my body would stiffen and I'd make strange sounds. I couldn't (and still can't) imagine any other way. It was almost as though there were a movie playing in my head. Very intense! When exhibiting these intense motor movements in public, my parents would yell at me to stop, which I did. I soon learned to control myself and keep that part of me private.

    I'm now married with three children of my own. I graduated college long ago and I'm a successful illustrator and designer. The hand movements are still a part of my daily life, especially when it comes to creativity and art (which is precisely why I chose the field I'm in), but it's toned down to the point where you'd never know it unless you were looking really, REALLY hard. Complex primary motor stereotypy helps me focus and create exceptional designs. If there was a magic pill I could take to remove it from my life, I'd absolutely refuse.

    So don't worry! Enjoy your child's little quirks. Hopefully it will help to make him or her great.

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